American Journal of Hospice and Palliative Medicine®

Research in palliative care and hospice populations is important for improving quality of care, quality of life, and provider understanding of individuals at the end of life. However, this research involves many potential challenges. This review seeks to inform and assist researchers targeting to design studies targeting hospice and palliative care patients by presenting a thorough review of the published literature. This review covers English-language articles published from 1990 through 2009 listed in the PsycInfo, Medline, or CINAHL research databases under relevant keywords. Articles on pediatric hospice were not included. Issues discussed include study design, informed consent, and recruitment for participants. Synthesized recommendations for researchers in these populations are presented.

Patients with cancer represent the largest group of hospice users, making this population critically important in hospice research studies. Despite the potential benefits of hospice, many studies have noted lower levels of utilization among African Americans. The goal of this literature review was to determine whether this disparity exists within this population of patients with cancer. The largest studies focusing on multiple cancers found lower hospice use among African American patients with cancer. Disparities also existed after entry into hospice. Age, gender, geographic location, preference for aggressive care, and knowledge of hospice influenced hospice use by these patients. Since African American patients with cancer evidently use hospice at a lower rate, future studies should explore potential barriers to participation by this patient population and methods to remove these obstacles.

We surveyed volunteers from 8 hospices in the Delaware Valley regarding training, perceived needs, and role satisfaction. Results were consistent with previous studies: satisfaction with preservice training and with volunteering was very high; respondents reported feeling very prepared and confident about doing hospice work as a result of their volunteer training. In addition, longer volunteer preservice training was associated with higher levels of overall satisfaction with training; levels of volunteer satisfaction and fulfillment tended to be lower during the first year of volunteering; and participation in volunteer support teams was associated with finding volunteer work rewarding and with feeling a part of the hospice team. Implications for preservice training and ongoing support and education of hospice volunteers are discussed.

People with amyotrophic lateral sclerosis (ALS) frequently express dissatisfaction with services. Patient satisfaction with services in ALS care is not always measured and service user perspectives are not usually included when evaluating the outcomes of care. There is a lack of consensus on what constitutes satisfaction for patients in ALS care. To date, health care professionals’ conceptualization of outcomes in ALS care has excluded measures of patient satisfaction with services. Exploring the context of the ALS service user experience of care will identify a conceptual framework that will include the domains of satisfaction with care for patients with ALS. An instrument that draws on the ALS patient perspective of services, developed on the basis of qualitative investigation, should be used to measure satisfaction with services.

The purpose of this prospective, correlational study was to examine the differential ability of demographic variables, beliefs, and values about end-of-life, spirituality, and social relationships to predict hospice use among blacks. The framework for this study was the Behavioral Model of Health Services Use. Data were collected from 104 terminally ill black men and women recruited from 6 inpatient and outpatient settings. Only 34% of the individuals participated in hospice services. Chi-square, sequential, and stepwise logistic regressions revealed that the best predictive model consisted of presence of a caregiver, having a religious affiliation, and male gender. Together these factors predicted 13.7% to 19% of hospice use among blacks. Health care providers can use these findings in planning care for patients early in their disease trajectory.

A 1-day training event for pediatric residents with interdisciplinary staff was held, which was modeled after the Initiative for Pediatric Palliative Care (IPPC). Training included relational communication, cultural humility, pain–symptom management, family-centered care, team problem solving, and strategic planning using didactic, small group, and plenary platforms. Two bereaved parents were co-learners and trainers. Twenty-six interdisciplinary staff participated. A positive impact was measured in new knowledge gained, value in collaborative learning with health care professionals and families, and ability to work with professionals outside participants' own unit. Confidence to advocate for improved pediatric palliative care was also noted. The IPPC curriculum is easily adapted for resident education. Incorporating family members as co-learners and teachers is valuable. Advocacy for pediatric palliative care may follow this type of experience.

Background: To assess quality of life (QOL) in patients with advanced lung cancer. Patients and Methods: A prospective study of 78 patients cared at home and at a palliative care unit (PCU) with 2 QOL assessments was conducted. Results: Fifty patients completed the study. In the EORTC QLQ-C30 role, cognitive, social functioning, global QOL, fatigue, pain, dyspnea, and appetite deteriorated; nausea/vomiting improved; dyspnea was more intense in the case of in-home patients. In the EORTC QLQ-LC13 hemoptysis improved; pain in other parts was more intense in the PCU patients. Pain (Visual Analogue scale) was more intense in the PCU patients; the level of activity (Karnofsky) decreased in the case of patients treated at home. Conclusions: QOL deteriorated with few differences between home and the PCU patients.

Cancer pain remains undertreated and a significant number of patients with cancer pain die from severe untreated pain. With increasing survival rate in cancer, the prevalence of cancer pain is also increasing in number. Though majority of patients with cancer pain can be effectively treated with conventional medical management, still a significant portion of patients required some form of interventional pain management techniques. Among the interventional techniques, intrathecal drug delivery is increasingly used in cancer pain management. Our objective of this article is to review literatures and clinical studies on intrathecal drug delivery system (IDDS) in cancer pain management and to provide updates on its use, precautions, contraindications, side effects and its management, socioeconomic consideration, and management of IDDS in difficult or uncommon situations.

We present the case of a woman who enrolled in the hospice benefit in order to obtain narcotics. We believe this is a cautionary tale for hospices because of our propensity to enroll patients with minimal corroborating information, in order not to delay symptom management. Also we are philosophically predisposed to believe a patient’s self-report of pain and other distressing symptoms.

The need to ascertain appropriate decision-making capacity is greatest when dealing with refusals of lifesaving or life-prolonging treatment. This may be complicated by delirium, concurrent depression, metabolic disturbances or significant symptom burden, family conflicts, and social issues. This is a case of a 48-year-old patient with a long-standing history of a symptomatic pan-invasive pituitary adenoma who refused life-prolonging treatment. Ultimately, a patient must be able to understand the information given to him, evaluate the consequences of the options presented, deliberate on these options based on his values, communicate this choice, and maintain consistency overtime. These refusals of treatment may fluctuate with time and intensity of the illness. Denial of this right of autonomy and self-determination may worsen the individual’s physical and existential suffering.

Refractory ascites causes significant distress to patients and can be managed in various ways. In hospice patients where the goal of care is to preserve comfort and foster better quality of life, diuretics should be tried first; however, in resistant cases, home-based paracentesis should be entertained. Home-based paracentesis is a safe and simple procedure that can be done blindly, if done under standard precautions there is minimal associated risk of bleeding, infection or perforation and no need for pre or post-laboratory testing or the correction of high international normalization ratio or thrombocytopenia. Home-based paracentesis is cost effective, provides immediate symptomatic relief, good patient and caregiver satisfaction and obviates the associated distress to the patient and family of transporting the patient for either outpatient or inpatient paracentesis.

The WHO ladder has been the most widely used approach for management of Cancer Pain. However, oral medications alone may be inadequate, particularly in difficult to treat cancer pain syndromes. Neuropathic pain is one of these refractory syndromes. The role of opioids has always been controversial in pain of neuropathic origin. We report a case of a 61 year old female patient with endometrial carcinoma suffering from severe neuropathic pain in her left lower limb. The pain was refractory to highest tolerable doses of oral morphine and neuromodulator drugs, viz. gabapentin and pregabalin. We managed the patient successfully with intrathecal morphine pump reducing the total morphine dose and improving patient comfort and satisfaction. Intrathecal delivery of Morphine ensured better efficacy with fewer side effects.